Taughmaconnell’s James is thriving a year on from surgery in America

Earlier this year James Galvin lined up for a U7 race at the local Taughmaconnell Community Games athletics event, something that was unthinkable just a year ago. While the 6-year-old wanted to win, his family watched on with huge pride that he could even participate and finish the race.

It's twelve months ago this month that the youngster had the life-changing selective dorsal rhizotomy (SDR) surgery in the St Louis, Missouri, and his mother Liz said it has made an “unreal difference” to her son's life.

While only a toddler James, who lives with his family at Gortanabla, Taughmaconnell in Roscommon, was diagnosed with a brain injury called PVL and cerebral palsy which resulted in spasticity, a condition in which muscles stiffen or tighten, preventing normal fluid movement. It meant major limitations in movement for James, who could only walk a short distance without tiring, he also endured difficulties with balance and a limp. The youngster's right heel could not touch the ground and he was forced to wear splints for most of the day.

With treatments like Botox only offering little help and few options in Ireland, his family faced the devastating prospect of his mobility worsening come his teenage years when he would likely have to rely on a wheelchair.

In a bid to give her little boy a chance at a better future, Liz Galvin née Beirne, who hails originally from Athlone, connected with others in the same situation and started researching possible solutions. It was then selective dorsal rhizotomy (SDR) surgery provided her with a lifeline and a hope of a better future for her son, who will be seven in November.

With the spinal surgery unavailable in Ireland, Liz then mounted a major fundraising campaign to raise close to €100,000 needed for the operation - with a simple and poignant message - Let's Keep James Walking.

It proved hugely successful, with the family raising €96,000 before they travelled to the United States last August, and Liz could not be more thankful to people all over the country who donated or got in touch.

The surgery in St Louis, Missouri removed the spasticity or tightness down his right side and improved his balance by cutting into some of the sensory nerve fibres that come from the muscles and opening the spinal cord. He also had a muscle lengthening procedure to straighten his leg.

While the period after the operation was tough as James was bedbound for three days and in pain, things began to improve as intensive physio started shortly afterwards.

From there, his progress has been very positive and his mum Liz, dad Anthony, and sister Kayla are delighted with his achievements since. A review with Dr Park went well and the family is hopeful James will be able to be weaned off the use of his splints within 12 months.

Climbing stairs, dressing or putting on socks were all huge difficulties prior to the surgery, but he's doing all of them now. “I don't even look at him now he flies up and down (the stairs) there is no problem whatsoever,” Liz said of James, who is going into first class in St Ronan's NS, Taughmaconnell this September.

“He's learned to ride his bike without stabilisers which we were reading up on and it is something many with cerebral palsy at his level find it difficult ever to achieve.

“Anthony was just practising with him here and he told him if you want to do it, you'll do it. I was thinking he was going to fall, but he got up on it and took off. He still has to learn to stop....but he's getting there,” she said.

Ongoing physio is vital to keep up his progress, according to Liz, who said the fundraising has allowed them to go to a specialist in Oranmore which costs almost €1,000 a month to help James to walk correctly and correct his heel/toe position.

“As long he keeps doing the physio and keeps active his prognosis is good and there should no issues or other surgeries,” added Liz, who said she was advised like many others not to go through with the surgery in America by medical professionals.

“They (medics in Ireland) said when they take away the spasticity all that will be left is the weakness underneath and he'd never be able to build strength and it's been the complete opposite,” said Liz.

A year on from the surgery and James Galvin is a busy little boy, playing soccer with Skyvalley Rovers and football with Padraig Pearses.

“With the football and soccer I don't know when he's older if he'll be good enough to make a team but you never know either. He's certainly tries and he's participating. He doesn't really see himself as any different and he has no fear,” she told the Westmeath Independent. “A lot of the time (with his friends) he's not as fast and he's never going to be but he gives it his all.”

With school just around the corner, James wants to add to his list of activities in September, and he hopes to start taekwon-do.

“Hopefully he will be able for it, and it will help him with the physio, the moves and the stretching,” outlined Liz, who is so thankful to so many people have got her beloved son to this point, not least those who ran events or donated to the Let's Keep James Walking campaign which has now closed.

“It wouldn't have happened without everybody who helped, donated and done everything (for James),” she ended.